Dis­ease doesn’t stop Sam’s dreams

Auckland City Harbour News - - News - By Hay­den Don­nell

At first glance Sam Stevens is like any other child.

He wants to be a pa­le­on­tol­o­gist, plays mid­field for a school foot­ball team and looks for­ward to his next fam­ily ski­ing trip.

But the 10-year-old lives with in­cur­able and deadly con­di­tion cys­tic fi­bro­sis.

“I don’t think it’s bad like other dis­eases,” he says.

“It can be an­noy­ing - re­ally an­noy­ing – when I get puffed or wheezy when I run. But I don’t get scared un­less I’m re­ally sick.”

Cys­tic fi­bro­sis is hered­i­tary, mainly af­fects the lungs and re­sults in a low­ered im­mune sys­tem.

It car­ries a life ex­pectancy of about 30, though some suf­fer­ers live to 40 and 50.

About one baby in 3000 has the con­di­tion, re­quir­ing a life­time of treat­ment.

Sam’s mum only found out her son had cys­tic fi­bro­sis when he was 15 months old.

Though he was of­ten sick and grumpy as a baby, it wasn’t un­til af­ter hospi­tal vis­its for se­vere stom­ach cramps that Sam was tested for the con­di­tion.

Mrs Stevens was shocked to get the news but glad he could fi­nally get treat­ment.

“I thought I was go­ing to be told I’m a neu­rotic mother and there’s noth­ing wrong,” she says.

“Now my ba­sic hope is for a cure.”

She is de­ter­mined to make Sam’s qual­ity of life as high as pos­si­ble.

He plays sport at school, has phys­io­ther­apy twice daily and does karate.

Of­ten he can be found at the beach do­ing fos­sil ex­ca­va­tions with friends, pre­par­ing for his dream job as a pa­le­on­tol­o­gist.

“We try to do as much nor­mal stuff as we can. He gets very shirty when the con­di­tion does re­strict him,” Mrs Stevens says. “Keep­ing ac­tive im­proves his qual­ity of life and life ex­pectancy.”

Sam goes on reg­u­lar trips and ap­pears in television ad­verts as a Cure Kids am­bas­sador.

He re­cently at­tended the Great Ad­ven­ture Race and greeted par­tic­i­pants at the end of their gru­elling six to eight-hour trek.

The event raised $593,000 for re­search into life-threat­en­ing chil­dren’s ill­nesses.

“We just want to make peo­ple more aware of cys­tic fi­bro­sis,” says Mrs Stevens.

“We want peo­ple to know th­ese things are out there and that th­ese chil­dren have it.”

Photo: BEN WAT­SON

Still smil­ing: Sam Stevens won’t let cys­tic fi­bro­sis stop him do­ing the things he loves.

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